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Author
Topic: Do You Ever Feel Like You Can't Talk About It? (Read 4582 times)

I have posted only a small bit here as I'm shy But my family doesn't support me a lot and essentially the only form of support that I have is from a handful of friends and from my partner.

The problem is that sometimes they are 'too' encouraging..does that make sense? Let me explain. I want to be optimistic, but is it not normal to be afraid and to want to scream sometimes? I mean...every time that I mention a fear that I have...no matter what it is...bless them, they mean well, but they always respond with something like 'it will be 20 years before you have to worry' or 'there are so many meds today that nothing like that will happen..'.

And it makes me feel stupid or pessimistic...and therefore I stop talking about my fears because they are so 'okay' with everything and perfectly calm and optimistic. And I feel absolutely unable to talk to them about what haunts me. Does anyone else feel this way or experience something similar? How do you deal with it?

Your family may not be the best people to talk to about your fears. They are trying to be supportive in the best way they know how. You may want to talk to someone who has HIV or who has faced a life threatening illness if you want to really vent and get the validation you are looking for.

I have all sorts of fears with this dreaded virus. I keep them to myself. I just read somewhere that people living with HIV are being diagnosed with many types of cancers at rates that are much higher than in the general population.

How's that for a eye-opener? That's something I will keep to myself. No need to worry others.

I agree with Paul, there is no such thing as a stupid question, so please don't be shy in coming here to ask whatever it is your need to ask..we have a great bunch of guys here and many of us have been in your place and shared our fears over the years.

I honestly believe your family mean well and I know it can be hard dealing with families but maybe their "Calm and optimistic" attitude is the only way they know how to cope with this news...be gentle with them and come here when you feel the need to sream and shout..there will always be someone here to listen.

It's not a stupid question. I thought I was the only one having those feelings.

I don't know how long ago you were diagnosed (1year here.). I told my parents and partner when I was told my status. I just threw it on them, which wasn't fair to them, but if I had tried to buffer it, I would not have had the courage to tell them. Since then I discuss it with my parents and partner when they ask, but get very anxious and want to change the subject ASAP.

When I found out my status, I knew I had to tell them and I thought my world was ending. I threw it out to them and waited for my world to collaps. It didn't and they have been very supportive, but I get still feel very uncomfortable talking to them about it. I have not been able to summon the courage to tell my brothers and sisters yet, not that I think that they would react badly, but having to admit to them that it is my fault for being stupid and bringing this into my life. I hope that it will get easier as time goes by, but as for now, I cope with the questions and hope I can change the subject as soon as I can.

Coming here and venting has helped and it is easier for me because the people here have already been where you and I are at in our treatment. It also helps because I know that someone here has already been where I will go in the future and are willing to share their experiences to help others to know what the road ahead has instore. As much as I want to have someone other than my ID to talk to face to face, I find it very hard to talk to anyone including my ID because of the shame I feel for allowing myself to be exposed. It also makes me have to face the fact that my parents know that I was unfaithful to my partner and I can't face that with my brothers and sisters and their spouses right now.

It's not a stupid question. I'm sort of in a similar situation - my parents, friends and boyfriend all know (and are all negative). They tend to seem quite uncomfortable when I bring it up and, like yours, a bit overly reassuring. I've been poz for 2 1/2 years and initially everyone was telling me I was going to be a long-term non-progressor, and when it became obvious that I wasn't they wanted to tell me how great the drugs were with minimal side effects and that I wasn't on them yet anyway and maybe it would be years. It feels pretty patronizing and dismissive sometimes.

I tend to think of this sort of behavior as them being too afraid to confront the issue of me being HIV+ and all the uncertainty, fear and stigma that goes along with it. It's tough and you can't know what it's like until you're diagnosed. But either way, it's mostly about them not being able to face the reality we all have to face every day with HIV.

It's important that you find a support network to air these fears and feelings, talk about it and go through any emotions you need to. It's only after that happens you can work out for yourself how best to think and deal with them.

Have been poz for a little over a year here and disclosure has definitely been an issue for me. I have told most or all of my close friends but have not yet told family and some straight friends. I guess I felt that they would not be able to handle it as well as I have or my gay friends have. I should probably give them the benefit of the doubt but I feel they might be more reactive and fearful about my chances of living a long productive life (which I plan to).

It also depends on if you family is your support structure- for me, it has always been my gay friends and not my family that I turn to for issues. I struggle with the idea if I have some shame that is preventing me from talking about it but will process that over time. I do know that they do not need to know right now as I am completely healthy and might cause them more fear/concern than needed.

Torey, it's not a stupid question at all. I agree with Jan, your family is doing that probably because that's the only way they can deal with it. It's hard being the person who's not infected. I think, though, when people do this about something you have genuine concern over, it makes you feel that your fears are totally invalidated. They're not.

Have you educated them a bit on HIV? You may want to show them the lessons on this site etc.

We're always here. You can let it fly with us.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

I read in your profile that you have only known you are positive since January of this year. Do you have access to any support groups near where you live?

I’m sure that in time the immediacy of needing to speak about your anxieties will ease up and you’ll find who and who not to look to for support. In my case my “family” is the last place I’d look to for that. In two decades of living with this I’ve found that some people simply cannot or don’t want to enter into that arena so I rely on those who will instead.

As others have said, there are always these forums you can turn to where others might understand better what you are dealing with.

Do I ever feel like I can't talk about it? I always feel I can never talk about it.

I do have a few friends and an ex-gf I can confide in, though it has mixed results. For example the ex tries to give me a bunch of herbal medicines that I never take, and advises me to brush my teeth often and clean my apartment. Some of my other friends are sympathetic but judgemental - 'I told you this woul d happen the way you were carrying on'. I have only one friend who is clinical about it - my favorite by far to discuss with.

As for family, no way could I admit it (well, presumably I'll have to when It is finally killing me). They would no doubt judgementally reduce assistance because my health problems are 'my fault'.

I just found out, and I've told a handful of friends. And yeah, they've been great, but they've been "cheerleading great". It would be nice if besides giving me advice that, no matter how sensible, seems to have come out of a self-help book, they would allow me to, sometimes, be afraid. I'd love a hug and a "everything's gonna be alright, I'm gonna be here with you throughout all this".

Afterwards I would stand up and go on with my life with even more energy and determination.

And it makes me feel stupid or pessimistic...and therefore I stop talking about my fears because they are so 'okay' with everything and perfectly calm and optimistic.

Hello Torey,

Believe me, we all have our fears...So your not alone. How we deal with those fears is another thing.

Best place to start, is tell us what your fears are, because we have all been there, at some point. You will find out, your not alone , in some of your fears. One thing that used to bug me through the years, was everytime I turned around, a lot of my friends would ask , " How you feeling today, how you feeling today". Everytime I turned around, the same question. Used to drive me nuts. I responded" Fine until you asked" But I did understand, that they just were concerned...

Hang in there Torey, will be looking forward to hearing more from you. When your ready. Don't worry about being shy, there's a lot of shy people out there, you not alone there either !!

yes, quite often, but I find that eventually I can talk about it, with someone, some time, not with everyone all the time (I mean everyone that knows not the people I hide it from).

In other words, some of not being able to share was me choosing to isolate and shut off b/c I didn't get the reactions I wanted - or felt dead guilty about worrying people, esp but not only my parents. But I found that when I choose to take the plunge its almost always OK. I mean OK that I dont get the answers I expected. I am kind of learning to share no matter what, even with my family. Not always, like I didn't tell them recently when I had a worrying result, only later when it was history; but it works both ways, cos my parents would never speak about their own health and now my mom for example has shared when she had a skin cancer removed, she was so worried for the biopsy, and it came back that all of it was removed - so she was able to share the worry and the good news with me in real time and not just in retrospect, which is something we never used to do.

PS J.R.E I know what you mean, I get those concerned, hushed, "so, how are you?" too. There is also the "you look good" (but with a grave face; not quite a compliment, more like an observation)

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"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

yes, quite often, but I find that eventually I can talk about it, with someone, some time, not with everyone all the time (I mean everyone that knows not the people I hide it from).

In other words, some of not being able to share was me choosing to isolate and shut off b/c I didn't get the reactions I wanted - or felt dead guilty about worrying people, esp but not only my parents. But I found that when I choose to take the plunge its almost always OK. I mean OK that I dont get the answers I expected. I am kind of learning to share no matter what, even with my family. Not always, like I didn't tell them recently when I had a worrying result, only later when it was history; but it works both ways, cos my parents would never speak about their own health and now my mom for example has shared when she had a skin cancer removed, she was so worried for the biopsy, and it came back that all of it was removed - so she was able to share the worry and the good news with me in real time and not just in retrospect, which is something we never used to do.

PS J.R.E I know what you mean, I get those concerned, hushed, "so, how are you?" too. There is also the "you look good" (but with a grave face; not quite a compliment, more like an observation)

Hi Torey.

I used to feel that I could not share with family as I would always put on an act of 'everythings fine, nothing is wrong, at least nothing I can't handle.' Then, I discovered that they were thinking the same thing when the truth was, they had just as many problems as I did. I don't like feeling helpless or weak so when asked, 'how are you", I would reply and then ask them the same thing "how are you?"

After awhile, I learned that my Mom, the Rock of Gibraltar, started to share, as both my sisters and so after it was not all 'about me'..there were less of the concerned hushes and more of a genuine caring.

reaching through the fog,ronnie

Logged

"I may not be exactly where I want to be, but I sure as Hell am not where I was" Wynnona Judd

Diagnosed/HIV1993AZTNorvir1994-2001Crixivan/Epivir/ZeritNo Meds for 7 Years

I have only known I am HIV+ since January but have probably had it already for some years without knowing I did. And I am afraid I have already told everyone - I may live to regret this but I doubt it!

I can talk about it – indeed I want to talk about it. And I find myself talking about it. Not always or even often my actual own illness, but the people I tell just often know so little about HIV and because they know me that realise it may actually concern them and want to know.

And I want to tell them – I want to tell them that HIV IS NOT curable as many I talk to seem to think, that the medications can give your long term side effects and even on meds you may still get a range of illnesses that HIV people can get, and I want to tell them how they can avoid it – as while I always knew how to avoid it and ironically I am the one who has it, so I thought everyone else knew………….but they don't .

At least here in the UK the message about safer sex has not got out, well not to the heterosexual people I talk to both young and old.

And when I say everyone, I mean nearly everyone. I am not so dedicated to raising awareness that I tell strangers in the street, acquaintances I will not see very often or the postman but I have told my daughter, my family, my friends, my community and have already been on Local Radio and will be in a UK National Newspaper on Sunday.

I guess the reason why this is not difficult for me is I feel no shame, and feel I took no risks to get this.

Please do not misunderstand me I do not judge anyone who may have got this through sex that may have known was risky for HIV or drug use - I do not judge at all.

As to me this is simply a virus, a particularly nasty virus that can and will kill you without treatment, but the virus does not discriminate, it does not care how you got it, it just lives to survive.

But I guess the reason I can see it this way is I got HIV from my husband of over 20 years, and the only person I have had sex with for over 25 years, and I have also not had any other risks such as drug use in this time.

So I come to this with no feeling of shame and find the stigma about what is just a horrible virus I and do not mean anyone should feel shame – I just mean that since I found I had it I have found that many do feel shame, and this is a lot of the reason people do not tell people that may have told about another illness such as cancer etc

Indeed already in the short time I have known I have HIV I have spoken to quite a few people with HIV who have explained their health difficulties by saying they have another illness, cancer, emphysema, an immunity problem etc out of shame of saying that it is caused by HIV

And the reason I inform as many as I can and intend to until I run out of energy - which may not be long, as it is tiring - and have gone to the National Media………..

........................is that if myself and my husband had HIV so long without knowing it that he developed AIDs and even when he was seriously ill his doctors still did not suspect what he had...................

then this could be happening to others

As his HIV - and mine - was only discovered and started to be treated ( I did not have AIDs as yet but my CD4 was getting low and I was not at all well) was because it occurred to me that HIV had to be the only explanation, and although I personally knew no reason why me or my husband could have acquired this, I asked for an HIV test for both of us.

And our doctor even did not want to give us that test!! Our doctor was as ignorant as anyone

He almost refused to give us an HIV test when I asked - as he felt I was suffering 'anxiety' that I was over reacting to what the Doctor thought was my husband just having a bit of flu - I could see he was dying - and our doctor only did the HIV test to 'humour' me because I insisted!!! The next day my husband was in hospital, on oxygen, intravenous steptrm and other antibiotics/meds etc and really did almost die!!!!.

How many other, older heterosexual people especially, in the UK at least, do not even suspect they are HIV +?

I feel I have to speak out

But even if I only spoke out to my friends, family and community I would hope by doing that it will save someone from this nasty virus!!Even if only my 19 years old daughter and her friends - who do not consider HIV AT ALL!! take note, and use safer sex, I may at least protect them!

The ignorance I have found about HIV is shocking. I only spoke to a 24 years old daughter of a friend the yesterday, her mum wanted me to and she was interested, who thought that HIV was not a problem anymore as if you got it, it was curable so there was no need for condoms etc as if you get it you just go to your doctor, gets some meds and you are cured!!!!!!, and she is with a man in the forces - -my husband is a seaman and apparently merchant semen and those men in the forces are high risk groups!

I have spoken to young men and men my age who have NEVER used a condom in their lives!! Because HIV is only gay men and 'poor' people in Africa they think, and again a lot of them thought that HIV was now curable...............I have spoken to many older people like myself who are now again having new relationships because their long term partner has died or they are divorced .....and few of them knew that HIV, or STDs was something that should worry about, as HIV was not around when they were young and STDs were not something to worry about as you just went to a clinic, if they worried at all.

I do not expect everyone - or even anyone - to react like me and tell everyone at all

While it has not been at all hard for me to do this and I have had few, if any adverse reactions, I do understand how hard it can be to disclose.I now have a friend with HIV who has only just started to talk to anyone after 4 years, another who has not yet told her grown up children after 7 years, another who has younger children who still do not know............................I do understand and respect we all have to handle this differently

But this is my wayIf just one person does not acquire HIV because they remember me and what I have said and use a condom or one person gets diagnosed before they have AIDs like my husband - I will think it was worth it.It is for me the ONLY way I can deal with this thing right now

But there is another aspect

I have lost several friends to other illness, cancer, heart problems, strokes even though I am only 55.And I have always shared my health or lack of it with my friends and family - if I just had a cold they would know about it and anything more serious, even if it was not life threatening , which I have had, I would tell them and expect them to visit me in hospital etc and visa versa

Had they not told me they were ill, even those who have died, I would have felt it a betrayal of our level of friendship or relationship if a family member. I wanted the chance to support them and to try to make their last months or weeks better with the support of friends or family.....and I feel the same the other way around - that I would always tell my friends and family and even my community as I have lived in the community for over 20 years - if I had an illness that could affect my life or ultimately had the possibility of killing me, I will tell them .

I refuse to treat HIV any differently!If I did then for me the stigma about HIV has won, I refuse to be stigmatised or go along with that stigma

HIV is just a nasty virus, it has no thoughts on the matter, only people do.

Veritee XXX

PS. I know I am in a different position from most as I have friends, family an a community I knew would support me and I am freelance and voluntary so do not have a job I need worry about, nor do I have school age children. I still have a partner so I do not have the difficulty of disclosing to new partners although if he dies sooner than me this could come.

So it was easy for me to just tell everyone just like I would have had I had something else and not HIV

PS - I am not that optimistic- as I sound I am not too ill currently at all now I am on meds - -but I found out about my HIV too many years down the line in my 50s so I can not ever be sure what my future will be or that I will not die much younger than I would have due to HIV? i do very much fear this may be the case!! But can not be sure

And my husband has had AIDs - he is a LOT better now due to the HIV meds

but .............the reality for me is that I do NOT believe that he will live that many years

- he does not look right, he does not seem well despite the meds - realistically I hope for the summer with hm, I hope further to have another couple of years But I will not 'hold my breath'

So I tell it to anyone that asks as I feel it is !!

If they think I am telling it 'over the top' then that is their problem - as I know how it really is for us!!!

...the reality for me is that I do NOT believe that he will live that many years

- he does not look right, he does not seem well despite the meds - realistically I hope for the summer with hm, I hope further to have another couple of years But I will not 'hold my breath'

Thank you for sharing this. I think a lot of partners or family of hiv sufferers, as well as we positives ourselves feel this way. When I look in the mirror at how thin I've become I always think, well, maybe another year or two.. or maybe I better start to make plans for a less painful exit.

But I think as much as outward appearance is a sign of what is going on, we who are closest to the patient, and who remember his 'old, healthy self' tend to judge too harshly. People can live for decades in emaciated, enfeebled states - look at the elderly. So just because quality of life may be so-so, don't give up on it continuing for a while.

Thank you Lord Bernard's - I am sure you are rightI probably do not look like my 'old self' either - he is probably too polite to mention it to me!

And I have just been taught a lesson in the futility of telling everyone your situation in order to educate and hope that those you love do not end up with this thing like you....

My sister who I am very close to and knows I am having a story published in the papers rang up to say she had a few drinks and is not sure whether she had protected sex with someone she does not know too well - she thinks she did but can not be sure but took a 'morning after' pill just in case to avoid pregnancy.I said what about an HIV test - obviously not for a week or two but its best to be sure

She said that she can't have an HIv test every time she may have made a mistake!! i agreed it seemed a bit much to do this, but afterwards I realised that if she is concerned enough to take a pill to avoid pregnancy every time she may have made a mistake, even if not totally sure you did make that mistake ..........................then she, and everyone in that position should be having an HIv and STD test too!! it does not make sense really to protect yourself against one thing but not to make sure yo have not picked up any STDs including HIV!!

This is exactly whey I tell people I love - and those I do not even know very well - so they will get an HIV test and EVERY time they make a mistake and of course not make mistakes. As if she did have an STD or HIV the sooner you know the betterBut if it does not work with someone I am close to and knows my situation well and is so upset for me that I have HIV - how is it going to work with those I do not even know??Maybe I am going to have to rethink?

I know how you feel. My sister and mom are the only ones I have told in my family and I'm sure they have confided in someone about my status, but whenever I feel down about having HIV they are like well they have meds, you can still have kids, you can get married, you can have a wonderful life...With HIV I feel like an alien. I feel like I'm hiding this thing inside of me that wants to come out, but I hate having any attention dealin with HIV. Yes I support the charities and everything, but as far as me telling the world or at least the city I live in that I am indeed HIV positive is highly unlikely. There is no way I can do that. They tried to talk me into talking with High School students about HIV, but there is so much info out there about this that I feel that telling them my status won't help at all.

ALthough it would hit close to home I think that my exes before I met this would probably look at me and be like well she caught it from the guy that she is with now. To be honest we both were shocked, because we had no symptoms. The first year we were together we "raw dogged it" and I got tested and i was negative the first six months and the next six months, but in 2007 the next year I got tested I came out positive. And it took my health care provider to tell me about it a month later. I still haven't gotten over that fact either. Well I just wanted you to knowthat you are not alone about how you feel.

Not telling is my choice, because I only have one partner and one partner only that I am with, but if there wassmeone that wanted to hook up with me at some point in my life sometimes I wonder if I didnt have HIV would I still be with the person I'm with now.

As someone who has been HIV+ for 22 years, I understand how difficult is to confide in someone and get the true understanding and comfort you crave.

Sometimes when we seek counsel from others, we hope for a perfect response that will be tailor made to our need and make us feel 1000 percent better. We want the person(s) we confide in to match our needs exactly. Of course, we rarely or ever receive that kind of response, even from those we are closest to or share similar circumstances.

You are, however, fortunate on several fronts:

-You felt that you could tell your family about your HIV status-You told your family about your HIV status-They did not reject you outright when you told them-They tried, as best they could and according to their abilities, to comfort you

Yet, it fell short of your need to be fully understood and comforted.

I submit that the combined support of your family (however different than you expect), the responses from those of us on this board, your medical professionals, friends, and others you may talk to, along with your own internal strength will help you deal with your HIV status and give you the power to work through this. It is not easy, as many here will attest. The good news is that you know what you need and you will know when the need for comfort and understanding approaches that which you desire.

I hope this response and others on this board help to give you some perspective and ease things just a tiny bit.

Best wishes.

Logged

"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

No it is not a stupid question and - Yes the board is really helpful in trying to sort things out for yourself and coming to terms with things - well I have found it this way.

I do know what you mean also about the responses not being as helpful as you hope.As I said above I have told many people including my family and others I love and it is my family that - surprisingly - seem to make the least of the fact of my HIV and seem to brush over my fears in a way that often seems too lightly taken.

They are the ones that reassure me too much about how everything will be OK, that now I am on the meds I will not get ill and not die eventually or AIDS related stuff nor my husband.

I do of course hope that this is the case and have read everything there is to know about living with HIV, and understand that it is possible to leave fairly healthily with this thing with the help of meds and good medical care - which we are getting. But the reality is not as simple as now we are on the meds our lives will go on unaffected by this thing.

Our lives are already hugely altered and affected by HIV already and we too have only known since January.

Our health is not as good as it was only a couple of years back or as good as we could have expected without HIV and although thankfully we both tolerate the meds well, they do have some daily side effects - different ones for each of us, and I know that there is a possibility that at least one of us will not live out the expected lifespan we did have - and as we are both in our 50s and will and do have the usual conditions of older age beginning anyway. HIV is going to affect our lives more and more as we get older, emotionally as well as physically.

But I guess it is our loved ones, relatives and those that we are closest to that want/need to beleve that we will both be OK and now we are on the meds our lives will be 'normal'

They say things they feel are reassuring and try not to treat you like you have a death sentence - but perhaps go too far the other way.

Because they want to beleve it will be like this and HIV will not mean anything adverse happening to you. They need to beleve this and so this is what they say to you and they do not want to hear about any other possible scenarios.

And of course I find my family disclose our status to others. But they do it because they need to for themselves. Because they need the support and understanding of their friends and confidants and even their neighbours etc for their fears and sadness. Especially as they can not seem to discuss their fear & sadness with us for fear of upsetting us. It would be better all round if they could - but they jsut can not seem to.

But my husband has already spent some time in hospital and has already come close to death and my family were reassuring - too reassuring - throughout that dreadful time. When he was very ill and in hospital and I was feeling ill myself as I had not started on meds and needed them but was scared to start without his support, I did need to be able to express my fears about the possibility of losing my husband - my companion of nearly 20 years - and then dying alone from AIDs related stuff. Or jsut simply the possibility that I had not thought through before that after a life time together it is obvious that even without HIV, one will die before the other and the other left behind will not have their life partners support through the process of dying - for me a horrible realisation that having HIV has brought to me sooner than otherwise it might .

Now my husband is more well, I so hope this will not happen - at least for many years, but I do understand what you mean about the responses of those you tell, perhaps making too light of your HIV - as I can not see having HIV is ever a light thing to have to live with, even if you have never felt ill and have no symptoms at all I am sure it still affects your life massively - it has mine.